The Worth of Vulnerability

Marilynne Robinson is a great American novelist and essayist who mines contemporary society for meaning.  Her themes are expansive and biblical in their proportions.  This what she said in a New York Times Magazine interview recently:

“People,” Robinson said, pausing before she defined that familiar word in original terms: “Brilliant creatures, who at a very high rate, predictably, are incomprehensible to each other. If what people want is to be formally recognised in society, to have status, to have loving relationships, houseplants that don’t die, the failure rate is phenomenal. . . . Excellent people, well-meaning people, their lives do not yield what they hoped. You know? This doesn’t diminish, at all, the fact that their dignity is intact. But their grief . . .”

I've been thinking a lot about grief lately, especially the grief of being inadequate to meet the needs of our loved ones.  When I can't soothe Nick's pain or when I hear my Mom (who lives in a different city) tell me over the phone that she hasn't eaten breakfast because her caregiver never arrived.  And I've been thinking about if and how my son and my mother are formally recognized in society - are they at all?  Robinson's mind seems to have wandered in the same direction as mine.  Here's what she said about human worth: 

The idea is that there is an intrinsic worth in a human being. Abuse or neglect of a human being is not the destruction of worth but certainly the denial of it. Worth. We’re always trying to anchor meaning in experience. But without the concept of worth, there’s no concept of meaning. I cannot make a dollar worth a dollar; I have to trust that it is worth a dollar. I can’t make a human being worthy of my respect; I have to assume that he is worthy of my respect. Which I think is so much of the importance of the Genesis narrative. We are given each other in trust. I think people are much too wonderful to be alive briefly and gone. 

We are given each other in trust - that is something I feel, absolutely.  I've given a lot of thought to the notion of human worth, especially that of people who require care.  What about someone like Nicholas who will never be employable and will always need total care?  I love him, but how can I publicly defend his worth?

Many parents will identify with me when I talk about Nicholas’ contribution to the quality of my life, especially to my spiritual wellbeing. I am a better person for loving him and caring for him. But certainly I cannot say that because I have cared for my son, and consequently increased capacities for selflessness in myself by virtue of attending to his needs, that either of us would wish to claim that as his contribution to life in general.  As the special needs Dad and theologian David A. Pailin said,  “Those who are looking for a reason to justify caring have not understood that love is a self-justifying and all-sufficient ground for certain types of behaviour. Those who remain puzzled by love (and even cynical about references to it) should therefore consider whether the contributory worth notion of value has blinded them to what is good in itself.”  

Some activists in the disability movement defend the worth of those with cognitive disabilities by pointing to the “contribution of being.” But that stance is rooted in what positive effects might be experienced by an able-bodied person while spending time with someone who seems unresponsive. “I love spending time with my aunt who has advanced Alzheimer’s disease because we just sit together. I have a busy job and she helps to slow me down” is one story I heard to back up this theory.   But, what if this aunt had no visitors who enjoyed sitting with her? Does this woman’s worth diminish the longer she lives without her capacity for reason? What if all her relatives were killed in an accident and there was no one left who remembered this elderly woman before the onset of her disease? In the case of the severest forms of disability, it may be too difficult to imagine an individual ever having capacity. How do we rate the worth of such souls? The theological anthropologist Hans Reinders expands on the idea of received love as the scorecard for worthiness. “The gift that profoundly disabled human beings have received is the gift of being, which is derived from the freedom of judgement. No entrance tickets are needed, no exams have to be passed. ...The gift of being is not an abstraction; it is the gift of being what you are.”

When I was researching my book and casting around for a theory of human worth that would include my son, I had a conversation with the distinguished professor and academic, Melanie Walker.  I told Melanie that the best theory I'd found so far was a religious one, but I worried that it wouldn't be inclusive for anyone who didn't believe.  "Well, you'll have to find a theory that's not religious", she said, shrugging.  "Try reading Eva Kittay."

Eva Kittay is a philosopher, but she's also a disability Mom.  Kittay's daughter Sesha has a severe cognitive impairment.  Kittay has a wonderful theory of human worth that includes her own daughter, Nicholas and my Mom.  "We are all some mother's child", she maintains. "Our dignity, I want to argue now, is bound both by our capacity to care for one another and in our being cared for by someone who herself is worthy of care."  This idea is perfectly personified by the mother and newborn baby.  This relationship of dignified, perfect care and pure love, is at the root of equality in human dignity and civil society itself.

Recently on Facebook, I saw that Eva Kittay had started an innovative project to persuade young academics from varied gender, economic and racial backgrounds into graduate work in philosophy. Her  inclusive project is called PIKSI.  With women and even people with disabilities entering graduate careers in philosophy, perhaps we'll have more inclusive theories of human worth that resonate with me and other families like mine. 

Standing Up for Love When We Feel Surrounded By Hate

Do you ever have days when you feel like you are the only person who cares about kindness?  When you begin to think that maybe EVERYONE else is thinking always and only about their own interests...about their own money, their own home, their own job....

Yesterday was such a day for me.  First came the fallout in the news of Toronto city council member Doug Ford's comments about a suburban group home for young adults with disabilities.

Ford is on record saying that a group home housing three young adults with developmental disabilities has 'ruined the neighborhood' and that property values have plummeted in the area.  The Toronto Star reported: "Some neighbours living near the Etobicoke home told the Star Sunday that they agreed with Ford. “I think they should go,” said Gord Ardron, 69, who claims to hear screaming coming from the house after dark. “I think they should be in a place by themselves.”

Then, yesterday evening, another news story broke... "Mother Threatens to Leave Disabled Daughter at Minister's Office."   Linda Murphy of Arnprior, Ontario, packed her bags and hustled her 20 year old daughter Ashley Corbett into the car.  They drove to Toronto and parked outside the offices of the Provincial Parliament where the distraught mother planned to abandon her daughter.  After seven years on a waiting list for a group home opening, Mrs. Murphy took drastic action.  As it happened, a temporary group home space near the family home was located and Murphy took her daughter back to Arnprior. 

There's an election on in Ontario right now, so the politicians all made statements and the public weighed in with their comments on the news stories.  Some members of the public blamed the current crisis in adult developmental services on the closure of institutions.  Others blamed inclusive education.  

Yesterday, I felt sad and afraid for the future of our society.  Is this the way we really want to think about our vulnerable brothers, sisters, daughters and sons?  What about our parents with Alzheimer's or our spouses with multiple sclerosis?  Do we want to move them off our street, far away 'in a place by themselves'?  

So today, I calmed down.  I began to prepare for a conference in Vancouver where I'm co-presenting on the subject of a caring society.  Here are a few quotes I typed into my notebook:

“An ethic of care can be characterized by a set of virtues, foremost among these are attentiveness and responsiveness to another’s needs and vulnerabilities.  Such responsiveness requires a self that sees itself in a relationship with the other.  It is a self that can attend to the other and make itself permeable to the needs of another through an empathetic identification with the other.”  Eva Feder Kittay (Beyond Autonomy and Paternalism: The Caring, Transparent Self)

 “The gift that profoundly disabled human beings have received is the gift of being, which is derived from the freedom from judgment.  No entrance tickets are needed, no exams have to be passed… the gift of being is not an abstraction; it is the gift of being what you are.”

Hans Reinders

“Those who are looking for a reason to justify caring have not understood that love is a self-justifying and all-sufficient ground for certain types of behavior.  Those who remain puzzled by love (and even cynical about references to it) should there consider whether the contributory worth notion of value has blinded them to what is good in itself.”

David Pailin 

Now, I feel better.  I spent the afternoon in the sunshine at the park with Nicholas and Jim.  We laughed and I kissed my young man on his cheek.  Jim and I held hands.  I will keep caring for the people I love and I know others will, too.  Recently, someone asked me to identify a single message I would share with other caregivers.  I said, "Tell your stories.  Talk about your caregiving.  Tell your neighbors, your co-workers, the members of your extended family and members of your church.  Tell people about the joys and the challenges of caregiving."  We need to change the world into a place that supports caregivers and the way to do it is through storytelling about love and kindness. 

The Caregiver Benefits of Silence and Solitude

This morning, I have no intention of getting dressed.  I have a cold and sore throat, but I'm not complaining, because I'm tucked up in a cosy robe, reading in a blissfully quiet house.  An hour ago, I settled on the sofa with my coffee and "The Guardian" newspaper open on my laptop.  I began to read an article by Sara Maitland called "Why Do We Have Such a Problem With Being Alone?"  Maitland is a fascinating woman and someone I instinctively like.  In her former life, she was a great hostess of interesting dinner parties and friend to many, a self-confessed 'chatterbox'.  Now, she lives alone in a remote moor in southwest Scotland.  The closest grocery store is 20 miles away.

Maitland questions why, in our society, we mistrust, fear or condemn those who would choose solitude as a lifestyle.  Her article is riveting for anyone who has ever had isolation thrust upon them, or has wished for and chosen solitude as a preferred state of being.

Caregivers know a lot about solitude, isolation, being alone, call it what you will.  Silence and solitude can be intolerable, especially for anyone with mental illness.  Even healthy people who are not used to being alone may feel anxious and desperate for company when alone.  Some may argue that our society, with its constant chatter of sound-bites, mini narratives and inspirational quotes has made us immune to the benefits of solitude - we have lost the knack of enjoying our own company.

Such a state is a double blow for caregivers who feel a burden of care for their loved one.  Mystics and religious scholars write about what it means to be human and how, sometimes, we can find that meaning in silence and solitude.  Hans Reinders is a Christian scholar whose academic specialty is cognitive disability.  He quotes a mother of a young man with severe disabilities:

For many, many years, I was confined to the house,  alone and without the support of friends or relatives.  My husband was at work all day and I was alone with Oliver and the other five children.  This enforced seclusion was difficult for me, I had a restless, seeking spirit.  Through Oliver, I was held still.  I was forced to embrace a silence and solitude where I was "forced to prepare the way of the Lord."  Sorrow opened my heart and I "died."  I underwent this "death" unaware that it was a trial by fire from which I would rise renewed - more powerfully, more consciously alive. (Hans Reinders, "Receiving the Gift of Friendship: Profound Disability, Theological Anthropology and Ethics", 2008)

I know what that mother is talking about - making peace with solitude and with oneself is a trying, but ultimately rewarding process.  That mother's son Oliver and my son Nicholas were the catalysts in helping us to understand this life lesson.  What I am talking about here is banishing the sense that the caregiver will constantly strive to be somewhere other than at peace and at home, giving care to someone she loves.  I think I am trying to say that the capability to be happy in solitude is an important element of the capability to give good care.

Sara Maitland has written several books about her chosen lifestyle and its meanings.  Here is what
Kathleen Jamie wrote in her Review of Maitland's "A Book of Silence":

But what is silence? Well, that's the rub. It's more difficult to define than you might at first imagine, and much of the book is an exploration of different kinds and uses of silences, and different silent places: deserts, islands. Silence, it might be said, is that which the modern world is seeking to banish. The world, and human lives, have never been so noise-filled. It's not just talk, of course, but machinery and communications and entertainment. It's hard sometimes to imagine that the planet, without the internal combustion engine, is actually pretty quiet. Is it an absence or a presence? A liberation or a captivity? Silencing is what the oppressed suffer, and silence - or solitude, the two seem synonymous - is what the desert fathers sought. 

It's funny that I usually write about the benefits of support networks, of the benefits of sociability for caregivers and their loved ones.  But as caregivers, what are the tools we need to derive benefit from sociability? We need to connect in ways that reflect and respond to our authentic experience with matters of love, life and death.  Silence and solitude help us do that. 

The Meaning of Friendship

Some friends are for life.  Some friends stick with you through thick and thin.  Friendship is a really, really big deal for everyone, but especially for our loved ones with disabilities or age-related vulnerability.   It may be that someone with a cognitive impairment cannot carry on a conversation, let alone forge and maintain friendly relationships.  Yet, these relationships are the key to a good life.  As the mother of a young man with disabilities, I always wanted (more than anything) for Nick to be invited to birthday parties and for our doorbell to ring and to hear the words, "Can Nick come out to play?" Friendship is vitally important to me and to our family.  

Hans Reinders is an author I keep coming back to when I think about the deeper meanings of friendship.  His book, “Receiving the Gift of Friendship: Profound Disability,Theological Anthropology and Ethics” is a text I used often when researching my own book.   The Amazon liner notes for his book read this way:

Does what we are capable of doing define us as human beings? If this basic anthropological assumption is true, where can that leave those with intellectual disabilities, unable to accomplish the things that we propose give us our very humanity? Hans Reinders here makes an unusual claim about unusual people: those who are profoundly disabled are people just like the rest of us.

He acknowledges that, at first glance, this is not an unusual claim given the steps taken within the last few decades to bring the rights of those with disabilities into line with the rights of the mainstream. But, he argues, that cannot be the end of the matter, because the disabled are human beings before they are citizens. "To live a human life properly," he says, "they must not only be included in our institutions and have access to our public spaces; they must also be included in other people's lives, not just by natural necessity but by choice."

My Nicholas does not suffer from a cognitive disability, but his physical disabilities put him at risk of social isolation.  He cannot speak or read or walk.  His has low vision and no hand function.  Could he be ‘chosen’ as a friend?  YES! 

Nicholas has a small number of lifelong, close friends.  One of them, Eleni Wener, met Nick when they were classmates in the 6^th grade.  Eleni is the young girl holding Nick’s hand in this school photo:

Eleni was so taken with Nicholas that when she performed her Bat Mitzvah, she dedicated her financial gifts to Lifetime Networks Ottawa, an organization that I helped to start in our city.  I wrote a newspaper about Eleni’s gift that appeared in our local paper:

Eleni’s friendship has informed her academic career choices – an undergraduate degree in disability studies is now being followed by graduate work in public health.  She came to visit our family in London and has never lost touch over the years.

To choose a friend is a deeply human act of civility and intimacy.  To be chosen as a friend is an honor that gives meaning and purpose to someone’s life.  Nicholas and Eleni are good friends and always will be.